Parkinson's Progression Markers Initiative: What to Expect as a Research Participant

The Parkinson Disease Center and Movement Disorders Clinic at Baylor College of Medicine is a clinical research site for a study of biomarkers in Parkinson's disease. Learn what to expect when you participate in the research study.

Video Transcript

Narrator. As a participant in the Parkinson's Progression Markers Initiative, or PPMI, you are making a tremendous contribution to research that could someday improve the lives of millions of people. It is the extraordinary commitment of everyday people that allows clinical studies to go forward, bringing us closer to new and better treatments for disease. By donating spinal fluid over the course of the study through a procedure called a lumbar puncture, volunteers will help to create an unprecedented scientific resource that could significantly speed development of better treatment options for Parkinson's. We want to give you a preview of this routine but vital procedure so that you'll know what to expect. PPMI is the first PD study of its kind. Its goal is to identify biomarkers' of Parkinson's disease.

James Leverenz, M.D. A biomarker is a substance or a way to identify in a person what is going on in them in terms of any kind of a disease process. Parkinson's is a disease of the brain and we'd all love to have a biomarker from blood but if you've looked at blood it's full of stuff from all over the body.

Elaine Peskind, M.D. Cerebrospinal fluid or spinal fluid surrounds the brain. It contains the proteins and other substances produced by the brain and by taking a sample of this fluid, we can assess the biochemical events that are happening in a living human being. And analyses of these substances will provide vital information that will help us develop new and improved therapeutic and diagnostic techniques. This is the only access we have to brain chemicals in a living person.

Narrator. On the day that you come in for your lumbar puncture, you'll review the procedure once again with the nurse, check vital signs, and make yourself comfortable while the medical team does their job.

Elaine Peskind, M.D. Good morning, Caroline, I'm Dr. Peskind...

Narrator. In addition to the doctor who performs the procedure, a nurse will be present throughout to make sure you're comfortable... and a laboratory technician will be on hand to gather the samples of spinal fluid.

Elaine Peskind, M.D. I'm going to go wash my hands now and we'll get you ready to go...

Narrator. The doctor will tell you exactly what he or she is doing... and exactly what you need to do.

Elaine Peskind, M.D. So go ahead and pull your knees up all the way... Now that looks pretty good... and feel the bones of your spine... Since you're in such a good position you don't need to do anything... just let me do all the work... Now I'm going to wash your back... here it comes, cold and wet... Now, Caroline I'm going to do the part that hurts a little bit... putting the local anesthetic in.

Narrator. For most people, the only "sting" is that moment when the local anesthetic goes in... just like at the dentist. Once it's in, we're ready to insert the needle and collect cerebrospinal fluid.

Elaine Peskind, M.D. Now you should be numbed up but I just want you to know that you shouldn't feel any sharp pain when I put the real thing in... but if you do, you let us know, and we'll put more numbing medicine in OK?

Narrator. In most cases, it takes about ten minutes to collect two tablespoons of fluid... which will give researchers dozens of samples to test for proteins and other brain chemicals, or biomarkers. There's a less than 1 percent risk of getting a post-lumbar puncture headache... and before you go home, the doctor will explain to you what to do if you get one.

Elaine Peskind, M.D. Any more questions? Ok you did great...

Caroline Hedreen. The whole atmosphere was calm. There was someone by my side just to make sure things were going well from my perspective. I think she asked me how I was doing... every two minutes she was checking!

Narrator. When you participate in research, you are giving something money can't buy. Every clinical study aims to fulfill the promise of scientific innovation, but these studies can be successful only with the participation of committed volunteers. Not only will biomarkers make earlier diagnosis possible, they are also vital to drug development.

James Leverenz, M.D. There are a couple of drugs that have been purported to treat the disease itself but the problem has been really separating out symptoms from true disease progression and that's where we really have lacked a biomarker for Parkinson's to allow us to do that.

Narrator. The samples collected in the PPMI will be made available to qualified researchers all over the world for future studies that could speed the development of improved treatments for Parkinson's disease.

James Leverenz, M.D. The other thing that we're creating here is a bank of data. Of biomarkers, spinal fluid, blood, brain imaging, that can be used by a number of different investigators almost forever.

Elaine Peskind, M.D. And really the benefit in the most altruistic sense is gaining a kind of immortality by contributing to research that will benefit future generations.

James Leverenz, M.D. I get asked all the time how close are we to finding a cure or to finding a treatment that really affects the disease or prevents the disease and of course I don't know the answer to that question. I can guarantee you that this kind of study is critical to move us forward and that if we don't keep doing research we're certainly not going to get to that point any sooner.